August 25, 2011

Another 'to do'

I completely missed a fundamental piece of ground-breaking research into colorectal cancer.

I need to get married

I already drink foul potions and avoid a long list of 'bad' foods. I exercise, meditate, listen to classical music and watch comedies. I keep a journal and am part of a support group. I guess there is only thing left that could save me: marriage.

A study of over 127 000 people with colorectal cancer in the US found that married people have a 14% lower risk of dying from their cancer than 'single' people. The researchers say that spouses provide support, encourage their partners to be compliant during treatment and give the person love.

Do I really need a marriage certificate to live?

The study didn't actually compare married people with single people, it compared married people to people that have never been married (this includes people in relationships but not married).

I've never been married, but I am in a loving and supportive relationship. I cook for her and spend lazy weekends cuddled up. She keeps me away from McDonalds and makes me fresh vegetable juices loaded with enzymes and antioxidants.

But maybe something about the marriage certificate changes people? Maybe it makes people better nurturers? Perhaps 'marriage-hormones' result in a stronger immune system. Is that why the study only compared married to non-married?

It seems the marriage certificate may do something. Many studies have found that married people are happier, committed to the longer-term and have higher levels of well-being compared to single people and those cohabiting. While cohabiting isn't as good as marriage (at increasing your well-being) you can catch up to married people if you marry soon after cohabiting.

It also seems the marriage certificate may do nothing. Some researchers say once you account for people's economic status, backgrounds and culture, being married makes you no happier than cohabiting. Also, modern studies focus on patterns within the relationship and not the legal status of that relationship. How you talk, interact and resolve conflict appears to be more important that putting on a puffy dress and having doves released around you.

I think a new study is needed before I buy a ring

If we add 'De-facto' and 'Do not share place of residence with partner' or some other awkward phrase to the stream of hospital questionnaires we complete as patients now, the data should be ready in 10 years. But cancer survival is usually measured over five years.

To get the best of both worlds (while waiting for the data0 I am going to focus on having a positive and healthy relationship AND start pretending I am married.

This way my immune system will benefit from being in a healthy relationship and will think it is bound to another person by law (just in case that piece of paper does actually matter).

And in cancer circles that's what we call a win-win therapy.

No certificate here and they are doing just fine

August 18, 2011

Full circle

The term 'young' in cancer circles usually refers to people with cancer under the age of 50-60. For me, I prefer the term 'really young', but that would confuse me with the kid or young adult cohort (normally up to the age of 25). The labels and groupings are important because people my age face unique issues when we meet cancer.

One of those issues is becoming a child again

I'm currently wearing nappies. I've had the rectal tube removed, but there is a steady trickle of fluid that still wants to leave my bot bot. It looks like chocolate milk but smells like a dead wombat. And it's runny. So runny that I can't really choose when it is going to exit. Hence the nappies.

Having my parents around to help with cancer has been a blessing. I quite happily slipped straight into the role I must have once occupied of high-dependent demanding brat. 'I want...' and 'I need this NOW' have flowed quite naturally from my cancer-affected mouth.

So you're 29 and went shopping for nappies with your Mum, I get it

Mums are really good at this kind of stuff. Mum knew exactly where to get nappies and what sort would be best. And to prove I have almost completely regressed I let her pay for them.

I've come full circle. My parents have been there this year when I've lost control of my bowels, soiled my clothes, soiled my bed and soiled my dressing gown (I've soiled nearly everything you can legally soil).

They have handed me urine collection jugs, poo collection jugs, wet ones to wipe my bot bot and wet cloths to cool my vomiting body. They've given me cash. They have tried to feed me. They've bought me lollies. They have given me massages, cut my toe nails (bending at that angle was impossible for a while), served me food in bed and gone to the shop at stupid hours for a particular ice cream I've wanted.

Thanks to all the parents out there of 'young' people with cancer. We couldn't do it with out you.

Take the stage

Staging cancers can be a confusing science. You need to know three things: how much the tumour has grown (T), how many lymph nodes are involved (N), and whether the cancer has metastasized (M) or spread. Different values for these three factors combine to give you an overall stage (Stage 1, 2, 3 or 4).

TNM system

Someone could have a high T but a low N, and the person sitting next to them with the ‘same’ cancer in the ‘same’ spot may have a low T and a high N. These numbers matter because they are good predictors of how long someone sits on the Endangered Species List, or even if they will one day come off the list at all.

There are two types of staging: clinical and pathological.

My clinical stage: T4 + N1? + M0 = Possible Stage 3 colorectal cancer

When clinically staging colorectal cancers doctors use evidence collected via biopsy and CT, PET and MRI images. My clinical stage was uncertain because some scans showed that a lymph node may have been cancerous, but the images weren't crystal clear. My tumour was clearly the highest level possible (T4) because it could be seen on the images trying to eat other organs outside the bowel.

Clinical staging is imperfect because of limitations in medical imaging. This round of staging is quite important though because it determines whether you have chemo or radio or chemoradiotherapy before surgery (and how much).

A second round of staging takes place once the tumour has been sighted during surgery, removed and analysed by a pathologist.

My pathological stage: T2 + N0 + M0 = A good result, but…

While in hospital I didn't ask about my pathology results because I was being hammered by the leak, dehydration and infection and wasn't ready for additional stress. The doctor, knowing the results were positive, decided to unleash them on me after a few weeks:
  • The entire tumour was removed, cancer-free tissue on all sides
  • The tumour was downgraded from T4 to T2
  • Zero lymph nodes were cancerous

    Up down, good bad, win loss
    This result is good, but it is unclear how good. The chemoradiotherapy (and all my other healing strategies) did a good job of making the tumour smaller (at the time of surgery no tumour was outside the bowel wall) and wiping out that ? node. But, my tumour was once a T4 and there was once a ? node. Only if the pre-surgical therapies had completely killed the tumour or made it vanish would my course of treatment change.

    The fact remains: While the surgical result was good (I got to keep my bladder and some vital man-organs after all), and the tumour is gone, I still had a nasty cancer when I first walked into the hospital and that is what will guide my next phase of care.

    The next step

    I’m told that chemotherapy needs to start within 12 weeks of surgery or it doesn’t work so well at helping you get off the Endangered Species List. I’m told that my cancer is ‘high risk’ for either coming back in the same area or in another organ. I’m told the clock is ticking and we need to move soon, leaking colon or no leaking colon.

    August 12, 2011

    Google a body

    I studied some human anatomy and a bunch of non-human animal anatomy as part of my science degree. But that didn't help me when the surgeon first mentioned removing my seminal vesicle: I pretended I knew exactly where it was and then raced home and checked a textbook.

    Ah ha! That's why my bladder was in danger
    Then, confused about why my whole bladder, and not just part of it, may have to be removed, I took that atlas to my next consultation. Having the surgeon show me on an actual diagram what may have to go and why was worth more than a thousand line drawings on hospital stationary.

    I wish I'd known about Google Body

    Google Body is a free web-based atlas of the human body. You can select male or female, skin or no skin, all muscles, some muscle or no muscle.

    It allows you to fade organs and systems in and out, hide tisssues, and highlight organs. It also tells you what you are looking at.

    I think Google Body is an excellent tool for patients to better understand their situation and participate in their healthcare.

    It's only one version of human anatomy (we're all a little bit different), but still a powerful visualisation tool

    Cancer patients hear a lot about lymph nodes, I have added them here (green nodes and channels)

    Found you seminal vesicle!

    August 6, 2011

    Packing heat

    I left hospital a changed person. 

    I lost 12 kg and gained an appreciation of high-fat, high-protein and high-everything food. I lost a tumour and re-gained the feeling that I will live a long life. I lost my sigmoid and gained abdo-bum. I lost my rectum and gained a new storage pouch made of colon. I lost fluid via a leaking hole and gained a tail.

    Yes, a tail

    The rectal tube starts somewhere upstream of the leak. It's job is to collect fluid that may otherwise leak out of the hole in my new colon and cause infection. A small balloon keeps it in place and the tube connects to a collection bag outside my body.

    The mission

    As I was strapping the bag to my thigh I felt like a spook packing a concealed weapon. A thigh holster holding a 9mm. Buttons, straps, shiny white plastic, nozzles, tubing, tape. I was in mission mode and the mission was simple: re-enter society and look normal.

    The unit: lucky I have one of the longest thighs in the world

    I have tail envy: leaving hospital with this tail would be cool

    August 3, 2011

    Leaking hole

    There are risks with every surgery. The risks are the things that frighten us during surgical consults. Acknowledging risk is part of the reason patients sign surgical consent forms.

    One of the risks when a piece of colon is removed is that the new connection could develop a hole. This is what happened to me, and the reason I am still in hospital after 21 days.

    Leaks happen in five percent of patients

    My surgery left me with a fully connected large intestine (minus the bad bits of course). The ileostomy (my Abdo-Bum) protects the large intestine while it heals by diverting waste at the end of the small intestine.

    Even though the large intestine is not handling food, it still produces mucous, sheds cells and is housing lots of resident bacteria.

    When the hole developed, this fluid was able to leave the colon and fill the space outside it. The body really doesn't like it when fluid that is supposed to stay in one area enters another. The result was an infection.

    Heal me

    I started feeling better several days ago. My small intestine has begun adapting. I can stomach food. The hot flushes have stopped. The reflux is under control. The dry retching after each meal has ceased. I'm no longer dehydrated. The fatigue is passing. I can hold a conversation.

    The hole will take a while to close. This happens naturally and over time. While it heals I will keep Abdo-Bum.

    I like Abdo-Bum, because after all, it saved my life. Had the colon not been bypassed that level of waste leaking out of the hole would have made what I have just been through look like a fairy tale.